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Levothyroxine dosage

(45 Posts)
Thingsthatgo Tue 21-May-19 18:42:01

Do you medication needs change? I was diagnosed with hypothyroidism 6 months after the birth of my second child in 2015, almost exactly 4 years ago. I started on 25mcg a day, and blood tests showed that my tsh was still too high (in fact it hadn’t changed at all 6 weeks later). I was then put on 50mcg a day which was much too much and made me very poorly. AFter many changes of dosage I eventually landed on 25mcg a day and 50 mcg one day a week. It seemed ok and most of my symptoms went away. I’ve recently been for my annual blood test and apparently my tsh is too low and I’m over medicated. I need to drop down to 25 mcg a day again. I’m so confused... how can that be enough now when it wasn’t all those years ago?
Thanks for your help!

LividLaughLove Tue 21-May-19 18:44:44

Yep, needs can change and should be reviewed regularly. Only lower your dose if you don’t FEEL well. Many people feel good with labs done doctors worry will send you hyper - don’t be afraid to advocate for yourself.

Thingsthatgo Wed 22-May-19 07:34:09

Ok thank you, that’s really useful. I feel ok... but now I’m wondering if I could feel even better!

Lara53 Sun 26-May-19 08:08:20

Levo is T4 only and does not work for everyone - a healthy thyroid needs T1,2,3,4 and 5. If you’d like information about what I do please message me.

With thyroid issues it’s also vital to investigate B12 and Vit D. I use a company called Medichecks for private blood tests as GP’s won’t test all I need. You need to do the full panel thyroid plus vitamins and also add Reverse T3 test. It is well worth the cost to give you accurate baseline and they also give docs report. TSH is not an accurate measure of thyroid health as it is a pituitary hormone.

Lara53 Sun 26-May-19 08:09:46

Oh and also skip your Levo on day of testing (take after) as it gives false high results and docs will want to decrease your meds

CherryPavlova Sun 26-May-19 08:15:42

Once stable an annual test is the norm and shorter intervals if that shows much variation.

Boohootoyootoo Sun 26-May-19 08:18:52

It's totally about how you feel.

I am really well in just thyroxine but lots of people in forums need the desiccated form of thyroxine to feel better.

Take what you feel you need - don't go on numbers.

Boohootoyootoo Sun 26-May-19 08:20:30

Lara - sorry, that's really not good advice at all. Taking your meds on the day of testing shows your medicated levels which is what you need for a test. Otherwise your results are inaccurate. No doctor would suggest this.

As well as that - you'll feel shitty!

mama4321 Sun 26-May-19 17:13:09

Actually BooHoo it's the instruction I've been given at the last 2 surgeries I've attended.

Feffylith Sun 26-May-19 17:19:47

Regarding the dessicated form @Boohootoyootoo please can you advise where to obtain it please? (Pm if you'd prefer). I've been on Levo for over 30 years and would be very interested to know if it would be better for me. Thank you

Boohootoyootoo Wed 29-May-19 16:20:39

Sorry I don't take it so don't know but a quick google will help.

You need a private doctor to prescribe it so that's probably your best port of call.

Good luck.

NeurotrashWarrior Wed 29-May-19 20:23:57

It's possible that your thyroid is recovering as you are/ were on a reasonably low dose.

I'd definitely get tests done at the same time each day preferably in the morning and before taking thyroxine; as pp poster said take the 50 dose a day after the test.

What were your results?

Thingsthatgo Thu 30-May-19 19:48:19

Thanks for all of your replies. Sorry I haven’t been back to read them sooner. I feel good at the moment... I can tell I’m a little over medicated, but it’s not making me feel bad, just hungrier!

thefirstmrsdewinter Thu 30-May-19 20:00:28

Op being overmedicated can have consequences for your heart and bones. I feel well when my tsh is under 1 but within range. Best to get a copy of your results. For some reason there are doctors who think your tsh is too low even when well within range.
For pp who don't feel well on levo alone TUK may be helpful: healthunlocked.com/thyroiduk

NeurotrashWarrior Thu 30-May-19 21:10:48

I used to feel ok when over medicated; now I can feel quite ill and definitely prefer nearer the 1 (no idea why) as said it can have long lasting effects.

If you have some thyroid function that's great as it will be making some t3 of your own. It's possible to recover full function but keep being monitored in case it goes back down or actually you
Go too hyper.

MindfulBear Thu 30-May-19 23:54:45

I take levo. Started on 125. I'm now on 200. I now also take liothyronine. As I don't convert t4 to t3 efficiently so need the t3 as well as the t4.
Dr tried to lower my levo to 150 a day. I felt horrific. I had to argue my case to go back up to 200. He wants to lower it again haha. I'm refusing.

I also take low dose naltroxene. I get a private scrip for this.

These 3 plus vitamin d and magnesium have changed my life.

However I had to go abroad to find this out

When I'm not optimal my memory is poor - as in I barely function. And my weight goes up and up. (1kg a month after my dd was born). In fact I am so unwell my DH thought I had early onset Alzheimer's. Couldn't believe the change in me when my meds were altered. Within 6 weeks I was like a new woman!!!!

I also use Medichecks for all my blood tests. My GP and nhs endo cannot get the right tests done so I've taken it into my own hands.

Lots of good resources out there to support you with this. Stop the thyroid madness website is a good starting point. Also hypothyroidmom blog. And plenty others. DM me if interested in more details.

MindfulBear Thu 30-May-19 23:56:20

Oh and yes. When you go for a blood test - always go for it at the same time of day preferably morning and never take your meds that morning. Always take meds after the blood test.

Otherwise the readings can be a bit odd.

I was told to do this by my endo and by my gp.

MindfulBear Thu 30-May-19 23:56:57

@Lara53 what do you do Btw?

Lara53 Fri 31-May-19 14:59:36

Well that’s your opinion to which you are entitled. Years of vast patient experience noted in groups all over the world shows that medical professionals will then judge that you are over medicated and then put your meds down thus making you feel worse. I have been massively let down and kept sick for over a decade by the NHS and am now educating myself and treating according to information gathered from a wide variety of sources.

MindfulBear Mon 03-Jun-19 00:05:14

The other change I made, on the advice of the endocrinologist who I saw overseas, was to go gluten and soy free.

All the changes taken together = amazing improvement in well being. Changed my life.

Try going GF for 3 months and see how you feel.

2919HereWeGo Mon 03-Jun-19 07:38:05

@MindfulBear how do the medicheck bloods tests work - who takes the blood sample?
Our GP will only test TSH!

Huggybear16 Mon 03-Jun-19 07:44:53

Oh my, please don't listen to @Lara53
That's not good advice, nor has she given correct information.

2919HereWeGo Mon 03-Jun-19 08:20:55

She is right about not taking meds immediately prior or even close to a test as it produces distorted results.
Advice I was given was test in the morning and takes thyroxine afterwards.

Huggybear16 Mon 03-Jun-19 09:26:56

Well yes, if your appointment is in the morning you take your dose after the appointment.

If your appointment is in the afternoon, you take your dose in the morning as usual.

Natsku Mon 03-Jun-19 11:21:34

I'm told here not to take my thyroid meds before control tests, the nurse always asks when she takes my blood if I took it or not. Best to ask though whether you should take it or not in case they assume you are taking it and take that into account, or assume you aren't and take that into account.

Huggybear16 Mon 03-Jun-19 12:26:29

Yeah, the nurse will ask and your answer will be factored in when interpreting the results.

Boohootoyootoo Mon 03-Jun-19 18:51:13

Sorry - I had never heard of that before. I guess my clinic factor in that you have taken it. I've not had meds adjusted.

Gluten free definitely helps.

Also recommended by Patrick Holford are the supplements attached. I would recommend ashwaganda too.

NeurotrashWarrior Mon 03-Jun-19 20:34:09

Whoa.

No iodine needed beyond rda that you can get from fish and dairy. If on thyroxine you don't technically need as much as it's a healthy thyroid that needs it to create the t4 and t3. Low iodine is an issue for pregnancy and breastfeeding mums and anyone who has a healthy thyroid and is on a vegan diet, vegetarian is better but still not great.

http://www.btf-thyroid.org/projects/iodine/advice-about-taking-iodine-supplements

Also see link to the fact sheet by Bath and Rayman; kelp is not a good source as it can contain high levels of heavy metals and it's not absorbed as well.

There's lots of good dietary advice on the BTF that's been looked at by nutritionalists.

NeurotrashWarrior Mon 03-Jun-19 20:42:45

Gluten free does nothing for me at all; everyone is different. If it helps, great but it's not a panacea for all.

There's a link to coeliac diseases in the ic you have that you're more likely to get hypothyroidism too. Beyond that it's just if gluten causes ibs as per FODMAPS IBS diet.

Good iron levels (ferritin over 70) is really good for people with healthy thyroids as it plays a part in its function, along with iodine and selenium.

If no thyroid, good iron levels are helpful simply because low levels can cause similar symptoms in people, as is the case with vit d and b12. Low b12 could indicate pernicious anaemia which is another auto immune issue - they tend to all be linked so it's worth getting checked.

Selenium helps with the conversion of t4 to t3.

The body regulates things like calcium and magnesium so extra supplements aren't always massively helpful, but a good Epsom salt bath is lovely! I'm taking calcium and magnesium when I remember as I'm breastfeeding.

Something I really didn't know about was vitamin a, getting more of that from diet has noticeably helped me but again I'm breastfeeding and you do need much more.

Lara53 Wed 05-Jun-19 16:48:32

If I took NHS advice I’d probably be bed bound permanently now, so I am healing myself using information gleaned from many different sources. I’m just letting people know that there are other options available if you are still feeling unwell after following NHS treatment protocols.

Boohootoyootoo Thu 06-Jun-19 12:03:34

Yeah, sadly I think you have to go further than NHS nutritional advice. There's just not enough research done into thyroid issues, I bet if as many men as women had it there would be a lot more!

I agree - the iodine isn't needed, unless you are deprived of it which generally we aren't in the U.K.!

The rest of the Holford thing really works for me - also carb free too (most of the time!). The carb free helps me keep my weight stable as well as keeps me awake! Carbs make me fall asleep.

Obviously what works for one doesn't work for another but I think becoming more conscious of what you are eating and of your lifestyle will always have a positive effect with HT.

MindfulBear Mon 10-Jun-19 19:02:07

@2919HereWeGo hi!
I choose where to get my bloods taken. The local hospital are listed on the medichecks clinic list. Then after the bloods are taken I stick the package straight in the post.
Results comes very quickly and you track it in the app.

Sad that I can get my bloods taken at the local hospital but the same hospital won't test any more than tsh!

Medichecks do thyroid Thursday. Every Thursday one of the thyroid tests will be reduced. Very handy!

I monitor my tsh ft3 ft4 my antibodies ferritin and vitamin d levels. Sometimes other stuff but normally just those.

MindfulBear Mon 10-Jun-19 19:08:32

@NeurotrashWarrior I don't agree with your comment re gluten and Ibs symptoms - not for me anyway.

I avoid gluten because my brain functions better without. The gluten allegedly increases the autoimmune attack. This manifests itself in me mostly in poor memory forgetfulness and early onset Alzheimer's symptoms - at my worst anyway

Since I've changed my way of living my quality of life has improved dramatically. I have a City job with lots of juggling information and people. At one point I could not do my job properly because I just couldn't process all the information - let alone at the speed required. I could no longer lead meetings or conference calls.
However. Adding liothyronine. Going GF. Taking Vitd and adding LDN to my meds. I'm a new woman!!!
If I fall off the wagon and start eating gluten again I notice it - the brain fog descends.

The IBS symptoms are nothing compared to the decline in cognitive abilities.

No idea how many people there are like me in real life but according to the various FB groups it would seem there are plenty around the globe.

NeurotrashWarrior Mon 10-Jun-19 20:23:41

Mindful there's a big link to gut and mind; apparently there are brain cells in the gut.

I can't remember all the research but there's been a recent link to Parkinson's and the gut I think?

Anyway? If it works for you that's great. It doesn't make any difference to me; discovering I was asthmatic and also that I'm better if ferritin is over 70 did.

I'm actually staring to think some symptoms I have are mild over dosing; dropping thyroxine dose slightly has improved my mind and Brain fog.

Everyone is different; my mil found she had developed a major sensitivity to gluten a few years ago which wasn't worked out till she'd had a battery of tests and it was the last thing that worked.

I'm cautious to say that everyone with a thyroid issue has an issue with gluten, that's all.

I have just discovered a few papers linking improved vitamin a status to reducing tsh and improving t4/t3 in subclinical hypothyroidism though. There are many many factors with the thyroid system so it's worth trying things to see what works.

Some people don't convert well and that is a big problem in the current nhs.

However it's worth pointing out there's a massive nice guideline review that's currently out for consultation...

NeurotrashWarrior Mon 10-Jun-19 20:24:49

https://www.nice.org.uk/guidance/indevelopment/gid-ng10074/consultation/html-content-2

NeurotrashWarrior Mon 10-Jun-19 20:32:42

Re gluten; it's very possible that some have a level of ibs causes by it that interferes with absorption of key elements that either has a direct impact on the thyroid function system or impacts another separate system that manifests with similar symptoms.

Certainly the fodmaps diet which is an ibs diet and can include gluten free of you find it's an issue, targets the way that oligosaccharides are digested, and the balance of fermenting/ digesting bacteria. I can't have too much of those foods at all. Onions in particular. I don't need prebiotics but I do benefit from probiotics and I need to eat porridge daily to feel well.

Gut bacteria are increasingly being shown to affect mood and concentration in some people. So gluten free could be a part of this system.

Either way, if it works, great.

NeurotrashWarrior Mon 10-Jun-19 20:34:55

Oh yes, I did discover my constant drinking of milk in decaf tea was inhibiting iron absorption; stopping that had a big impact on me.

MindfulBear Tue 11-Jun-19 12:52:16

Thanks @NeurotrashWarrior Some very interesting thoughts and thanks for the link

I do have a problem with conversion. Diagnosed overseas. My nhs endo will continue prescribing T3 but I don't know anyone who has been diagnosed with a conversion issue in the U.K.

It's not just the nhs that is a problem. It is now U.K. doctors are trained that is a problem. This is an extension of the nice guidelines which seem to deny there is no other viable treatment than levo.

Makes me very cross.

There are no thyroid specialists in this country. No auto immune thyroid specialists.
All the specialists are diabetic specialists!!!! No use to me at all.

Very sad the lack of investment in understanding this disease. And astounding a country which many consider 3rd world should offer me such a new life just by changing a pill and my diet!!!!

NeurotrashWarrior Tue 11-Jun-19 13:09:29

Treatment for many is rubbish.

I've met two with conversion issues and very ironically (in the thyroid world) they both worked with the British thyroid foundation and were on t3.

Patients need to keep the btf informed of issues so they can lobby the people who hold the power and purse strings.

T3 isn't great for everyone but many online groups say it is.

I'm glad you're feeling better. I'm having a dozy day after a very buzzy day yesterday; I accidentally took 125 both sat and sun. I'm going to have to take the bull by the horns and drop to a straight daily 100, which makes me nervous but I think longer term I'll be more stable. Or enquire about the 12.5 tablets.

MindfulBear Wed 12-Jun-19 09:32:16

@NeurotrashWarrior I used to take 200 levo every week day and 150 on the weekends.

Made it easier to remember!

Nowadays I take 200 every day. Unfortunately my endo is desperate to reduce it. He cannot cope with the fact that t3 depresses my tsh. However I don't feel overmedicated so I'm happy.

cuddles37 Mon 24-Jun-19 22:24:30

Hello, I was diagnosed with an underactive thyroid two weeks ago and started on Thyroxine 50mg. My TSH was 12 and the other marker was very low the Dr said. I have Crohns Disease and was just blaming my tiredness, depression, weight gain, etc on the fatigue from that. I have also been going through an extremely stressful time since last December, I started another thread about my 13 year old DD being diagnosed with Inflammatory Bowel Disease. I have to get my bloods checked in four weeks time. My Dr said they will check for antibodies because of my other auto immune issues but that our hospital lab does not check the free T3 and T4. Just wanted to say hello. I am feeling no better, if anything worse....

CrunchyCarrot Tue 25-Jun-19 10:53:07

Hi everyone smile I'm another hypo person, I now take T3 only as I don't convert properly and taking even 50 mcg of Levo shot my FT4 to the top of the range but didn't alleviate symptoms. I ended up sourcing my own T3 as I can't get it prescribed (my labs are apparently 'normal' now despite still having lots of hypo symptoms). I know a lot of folk who take either NDT or T3 only, and swear by them.

cuddles a TSH of 12 is pretty high and a 50 mcg dose of Levo is very small, it's just a 'starter' dose and you should ideally have that dosage increased after your next blood test. I really hope Levo works for you! As for antibodies, it's good your doc has ordered tests as it's useful info to have. Bear in mind, it's a marathon not a sprint with thyroid disease in terms of recovery. I'm 3 years on from diagnosis and not there yet. I hope your journey is far quicker! smile

thefirstmrsdewinter Tue 25-Jun-19 12:01:29

Neurotrash like you I didn't feel better on a gf diet; my symptoms and (high) antibodies were unimproved. If you spend any time on the thyroid boards (as I did for some years after diagnosis when I was very unwell) you'd think it was a cure-all and an absolute must for recovery. I think it's worth a try because many people report feeling better, and it's not necessarily a big lifestyle change. I missed being able to order a beer in a pub, but that's changed a lot.

I'd add that I felt awful on levo alone and improved on t3 + levo but appear to have no obvious conversion issues. I'm not sure about reverse t3, if it's wooly or scientifically significant, but after a few years feeling better on a stable dose of t3/t4, I started to feel unwell again and blood tests showed my rt3 was borderline high. I adjusted my dose (reduced levo and raised t3 from 10 to 20mcg) and it really helped.

It's a shame that there is so much resistance here to using t3. Elsewhere it's considered a troubleshooting strategy to add in some t3 if symptoms remain on levo. It does mean my tsh is always a little low but my gp said if my bloods are consistent over time and everything else is normal they won't force me to reduce my meds.

cuddles37 Tue 25-Jun-19 20:22:59

Thank you for the information CrunchyCarrot I really appreciate it. Pity you still aren't sorted, wouldn't it be fab to just even have a tiny bit of energy? So hard to just keep plodding along. Fingers crossed we feel better soon x

CrunchyCarrot Tue 25-Jun-19 21:45:40

Thanks, cuddles flowers I agree the fatigue is ghastly.

I'm the same, mrsdewinter, being GF and DF has made no difference at all to my (still high) antibodies. I do feel better for being GF though so I've stayed with that, but gone back to dairy (only in a small way though as I've developed histamine and oxalate intolerances and yoghurt sets off histamine reactions as does most cheese). Sigh.

I spent a lot of time on thyroid boards (not so much now as there really is more to life!) and yes, the GF mantra is very prevalent. If it works, great. I'm not convinced it's a necessity for everyone with autoimmune disease.

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